Acoustic Neuroma Hearing Loss

30-03-2014 10:45am #1

Having been recently diagnosed after single sided hear loss in my late thirties I was wondering if there was anyone else out there with experience of an acoustic neuroma ? Mine is quite small still at .5 * .8cm.

13-06-2014 8:44pm

An acoustic neuroma is a benign tumor that develops on the nerve that connects the ear to the brain. The tumor usually grows slowly. As it grows, it presses against the hearing and balance nerves. At first, you may have no symptoms or mild symptoms. They can include

Loss of hearing on one side
Ringing in ears
Dizziness and balance problems

Acoustic neuroma can be difficult to diagnose, because the symptoms are similar to those of middle ear problems. Ear exams, hearing tests, and scans can show if you have it.

headtheball14 · 07-08-2014 7:53pm

Hi 210, just diagnosed this week with a medium sized neuroma, trying to find the best treatment options for myself. How have you got on?

09-08-2014 9:56pm

Hello mate and welcome to the AN club. I'm was only diagnosed myself about a year ago so my experience is pretty limited to date. I have been lucky in that my neuroma is small at about .8 cm. I have recently had my second mri 10 months after the first which diagnosed th problem. Fortunately the size has remained stable between the two scans meaning no further growth between . I find this a little bit strange as having started off and having taken my hearing on the left it seems funny to me that it would just stop growing. The doc says this stopping of growth happens in about 30 % of cases. I have to wait now another twelve months for a further mri to see how things go. If the size remains stable then we play watch and wait with an mri every year. If it grows then the likely course of action is the cyber knife laser in the Hermitage to see if this can stop the growth.

headtheball14 · 11-08-2014 10:29am

Thanks for getting back to me. At the moment I'm waiting for a consultation to get some feedback on what options I have. And everyone is on holidays at the moment.
You're lucky to pick it up so early it gives you a bit of time and options.
I didn't realise the hermitage had cyber knife, I thought I would have to travel to the UK for any treatment beyond surgical and a consultant here would need to sign it off first.
Thanks so much for getting back to me, I am in complete limbo here and besides some friends, I'm trying to keep it to myself till I see the consultant at least.

11-08-2014 8:53pm

The first few weeks and months are pretty tough. I have also like you been very wary of letting people know because if you google search AN some of the stuff turning up is pretty challenging. The internet is great but a lot of the stories on youtube are a bit tough to watch and while its hard to look away I found other sites more helpful, you might have found them already but I will try to add shortcuts below . From my very limited dealings to date cyberknife would seem to be the prefered route here if the size of the neuroma is treatable by it. I assume there is a size where surgery becomes the more appropriate treament. The cyberknife is new here and I assume that it is where all AN patients will go if there neuroma size is appropriate to treatment by it. Once you get to meet with the consultant things become clear very quickly because the one consultant will be involved whether your treatment is waiting and monitoring, cyberknife or surgery .

11-08-2014 9:02pm

Cyberknife ,

http://www.hermitageclinic.ie/services-specialities/clinical-departments/cyberknife/

British Accustic neuroma association

http://www.bana-uk.com

Acoustic neuroma association USA

https://www.anausa.org/

headtheball14 · 11-08-2014 10:56pm

I hadn't even looked at you tube until you mentioned it. Now trying to avoid delving into the surgery videos and there are just a lot of Americans saying its a blessing or developing their relationship with god.Not feeling like that at the moment....

I had a heap of plans for ways to spend the rest of this year and it didn't involve having my head drilled into. To be honest I kind of panicked getting an MRI so not looking forward to being a patient.

I just hope I get to see a consultant soon, I'm convincing myself I have very symptom mentioned , I think from the size I'm most likely to have surgery but the cyber and gamma knife sound like great options if available. We will probably look back in 20 years at surgery as medieval.
Back now to finish my best bottle of wine , hopefully with it I'll climb out of my self pity.
Thanks again, I really do appreciate it.

11-08-2014 11:33pm

Apologies, probably shouldnt have mentioned the old youtube - manys a sleepless night followed a bit of AN youtube surfing. Things might seem a bit bleak at the start but the clouds soon start to part a bit once you see the consultant & get a plan of action.

headtheball14 · 13-08-2014 12:17pm

No, it's been helpful once I avoid the surgery videos, some of the progress videos are great.
At least you can follow the improvements. The forums are very good.
No appointment date with the neurologist yet

13-08-2014 10:00pm

It took just under three months from my diagnosis in a regional hospital until the first appointment with the neurosurgeon in Beaumont. Hopefully the summer break doesnt change this too much for you.

I found the neurosurgeon tag at the bottom of my appointment letter pretty daunting. When I eventually got to the appointment though the focus seems where possible for surgery to be the last treatment option so while you mentioned medium size hopefully the range of other treatments such as monitoring or cyberknife remain in the mix.

10-09-2014 10:22pm

http://www.dizziness-and-balance.com/disorders/tumors/acoustic_neuroma.htm

another interesting site.

headtheball14 · 12-09-2014 12:29pm

Thanks 210, I had my meeting with the neurosurgeon a couple of weeks ago. That was about 2 weeks after my initial diagnosis.
They have recommended radio surgery treatment (cyberknife) .
I was delighted with that as I didn't think it was an option but back to waiting now, everyone seems to be on holidays again.
It's all a bit up and down I'd just love to have the next date

I found the following article which was really helpful, someone who had both surgery some years ago and cyberknife recently
independent.ie/lifestyle/health/living-on-a-knife-edge-how-robots-saved-my-life-30233323.html

Can I ask, my neurosurgeon said the radio surgery would be in Beaumont , is there a machine there or do you know if they refer to the Hermitage from there?

12-09-2014 9:10pm

Thats great news,

From a quick search Beaumont seems to be part of the st Lukes network which I think has a linear accelerator which is like the cyberknife .

In the St. Luke's Network, stereotactic radiosurgery s mentioned as being delivered in the Rathgar centre using linear accelerators, (Not sure where the Rathgar centre is ?)

Also not very sure what the difference is between a Linear Accelerator and a Cyberknife - both look quite similar.

Have a look down through the following page about st Lukes,

http://stlukesnetwork.ie/treatments/treatment/radiotherapy.html

12-09-2014 9:59pm

http://www.independent.ie/lifestyle/health/living-on-a-knife-edge-how-robots-saved-my-life-30233323.html

hadnt seen this before, very interesting.

18-09-2014 8:40pm

Long-Term Outcomes after Radiosurgery for Acoustic Neuromas

http://www.nejm.org/doi/full/10.1056/NEJM199811123392003#t=articleBackground

04-11-2014 10:56pm

Evening headtheball, how are things going with yourself ?

headtheball14 · 06-11-2014 3:19pm

Not great unfortunately it's been decided that I need full surgery now. Back to waiting, ringing, leaving messages , hearing nothing back. It's very frustrating. A 1/10 chance of permanent facial damage and a long recovery. On the one hand I want a date and on the other it's the last thing I want to think about at the moment. Any progress on your side?

07-11-2014 1:02am

At many of my tests such as at the mri and other stuff the people in a lot of different places have picked up I assume from my the notes the name of the doctor who most likely will do your op. I take it they must see a lot of patients like us both before and after the different treatments. Many of them have taken the time just to mention they see who the doc is and they have made very positive comments about them. I take this to be a good sign because they didnt really have to make any comment & hopefully you have heard the same.

GeorgeHQs · 27-11-2014 12:36pm

Hi, just found this page and glad to find others in Ireland the same boat as me ( well not glad but you know what I mean).
Diagnosed with AN about 3 years ago following significant hearing loss in right ear.
After 1st couple of years of MRI etc, minimal/ zero growth in tumor so wait and see approach taken.

My most recent MRI however should a growth by about 3MM so advise now is GAMMA knife at Hermitage. (currently awaiting this, hoping it will be in next few weeks).

Difficult news really after not really having to think about it much after last couple of years.
However, advice is that GAMMA knife has 95% success rate and risks/ side effects seem minimal so coming to terms with it now and adapting to the new reality of it.

Will let you know the progress or give any relevant info I come across.

Best regards,

G

headtheball14 · 27-11-2014 9:24pm

Hi George,
It is good to have people in the same boat. Ive had great help just knowing someone else is out there. Its difficult with this because its sounds so awful when talking to people with no experience of brain tumours , but i feel let off easy compared to people with other types of brain tumours.
The hermitage seems like a great option if you can avail of it ,i probably will have to have that after surgery at some stage so will be interested to hear how you get on.
Ive had a follow up MRI which at least says i don't have much growth since the last one a few months ago. And i got my next consultant appointment so guess it was a good enough thanksgiving for me.

GeorgeHQs · 28-11-2014 12:00am

Thanks for post and totally agree having someone in similar situation to help make informed decisions about how to think about and deal with it. I know surgery is a bit daunting and happy to discuss each step in your "journey" if and when it has to happen. Hopefully all will go well and you will be able to leave it all behind you in next couple of years. I hope to try and get the Gamma knife tackled asap. It seems to take a year or so to see if it has been successful or not. Of course there's concerns but got to try and have a normal and happy life and not dwell to much! Onwards and upwards! G

ryanerer · 12-12-2014 10:56am

Hi I had an acoustic neuroma removed 11 years ago..had slight facial damage after it for around 8 months.But it returned to normal after that.
I have recently undergone cyberknife treatment for another brain tumour.In the Hermitage.
Of the two options I would choose cyberknife anyday..
there is only one machine in Ireland and that is the hermitage.I had vhi thankfully so was after a lot of phoning and arguing with them finally got approved.as the cost is around 16k.or a long waiting list otherwise.Tumours have to be under 3.5 cm to be treated this way,so very important to act quickly if this is the route your are going to go.
If you have any questions you want to ask me in more detail,msg me..

Cheers

E

GeorgeHQs · 15-12-2014 6:52pm

Thank for reply R. I have received approval from VHI for Cyberknife about 1 month ago but still awaiting further update since. Am eager to get in done. In your case, were both tumours unrelated? In your situation do you continue to get regular MRI screening etc? Thanks for feedback, good to hear from people who can talk about it retrospectively.

ryanerer · 15-12-2014 7:14pm

Hi that is good you got approved,keep phoning the cyberknife team for updates on a date,dont sit and wait for them to contact you.
Who are you dealing with there?
I am due back in Feb for my mri after it.6 months after cyberknife,as before would not show any change bar maybe swollen,so 6 months gives a better picture...
My tumours are unrelated, unfortunately I have nf2 so develop tumours.
If you have any questions re cyberknife I will happily answer them if you want to chat on here or via phone?

Elaine

GeorgeHQs · 15-12-2014 9:22pm

Thanks Elaine, I have no contact there yet but will follow up tomorrow. Sad isn't you have to push to get things moving for something like this. You obviously been dealing with this for a long time with NF2. Thanks for advise and I may have more questions as they arise. Thanks again, and Happy Christmas. George

16-12-2014 12:23am

Evening George, evening Elaine. I think it was headtheball who mentioned it initially but there is a big benefit and some reassurance to knowing your not the only one in this boat . I found it very isolating at the start which I assume looking back is probably a natural enough reaction. Slowly but surely I am becoming more accustomed to the knowledge that my little dark passenger will be walking with me for some time.

Hope all goes well in the new year with your scan elaine. Did the radiation cause you any additional symptoms after the treatment ? I had heard about the swelling and wondered if this might cause trouble with balance ?

09-01-2015 12:15am

Interesting discussion from the MD Anderson cancer centre in US relating to Acoustic Neuroma, can be found on you tube at the location below.

https://www.youtube.com/watch?v=9rNu9Yryj1A

headtheball14 · 13-01-2015 1:18am

I hope everyone is keeping well and made it through christmas ok,I still haven't made a decision yet on treatment, still reading and changing my mind

headtheball14 · 13-01-2015 1:39am

just saw this article today, it might be of interest
I can't post proper links yet
theguardian.com/commentisfree/2015/jan/12/my-brain-tumour-acoustic-neuroma

GeorgeHQs · 13-01-2015 12:33pm

Hi all, I have my cyberknife treatment in the Hermitage this week.
Had a hearing test yesterday and hearing in effected ear has deteriorated again.
Advise was that it is "hardly functional". Seemingly (I only found out yesterday) that if Cyberknife is fractured into more than one session there is a better chance of preserving remaining hearing. Its difficult for a patient to make a call on this without a full clarification of any potential benefits of maintaining what's left in the remaining ear.

Anyway, looking forward to getting this step over and done with.

Can anyone advise any side effects from Cyberknike treatment they had following treatment?
Will it be necessary to take some time off work after the event?

Thanks & hope all it well.

George

Acoustic Neuroma Hearing Loss

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